Tag Archives: friendship

“I’m going out with work friends after work. They will bring me back to work so you can pick me up.” Marie’s text message on Friday afternoon to Ralph and I.

I paused before replying. Not asking us. Just informing us.

Marie is the oldest and last of our children to move toward independence. Both Will and Patty are living together in another city. In the first part of 2016, we strongly urged Marie to move out of our house and find an apartment or a condo. We looked up apartment complexes and visited several. Ralph met a real estate agent/nurse at his cardiac rehab program and Marie and I looked at condos with her. Twice we were at the stage of signing papers; one to buy a one bedroom condo, one to rent an apartment. Only to back away at the last moment.

We went to Ohio for a weekend to pick up Patty from grad school, leaving Marie at home alone. Marie cannot drive and had no friends that we knew of to hang around with. She was lonely and bored. After we got back, she informed us that she did not want to live alone. She then went up to her room and used half of the money she had saved for the down payment on a condo to pay off some of her student loans.

So much for our efforts to push her toward independence.

Then Ralph was diagnosed with bone marrow cancer in June. Our doctor made an appointment for him to be evaluated by a bone marrow transplant team in July.

I realized that we had to move out of our 100 year old house due to his immune deficiency, especially if he was going to get a bone marrow transplant.

To be honest, I had long talked about moving. I felt overwhelmed by all the stuff in our house, by the maintenance work that we could not keep up with, by the outside chores. Ralph had been ill since the fall of 2014. When I talked about moving, he said, “We can’t move until I have fixed it up.” But he wasn’t strong enough to do the work. And I didn’t have the time or the skill.

So I suggested helping Marie with a down payment on a condo, and having her get a mortgage with her job and her stellar credit. She had savings and no debt except her remaining student loan payments. And I believe God prepared this condo for this situation in our lives. This was the only property we looked at. We took a tour on July 3, 2016. Marie signed the mortgage on August 11, 2016. We moved in on August 20.

Instead of Marie living with us in our house, we are now living with Marie in her condo.

So yesterday, she let us know she was going out after work with Friends. With people we don’t know. Friends she had made at the job that God supplied. The first time she has ever done this alone. We have always supervised her outings or made sure she was with people that we knew and trusted. For me, it was almost as hard as the day that Will got on a plane by himself and flew to California for a week. I was nervous. But I couldn’t say no.

At eight, I texted her to see how it was going.

“We are walking around Rockford. We are having a good time,” she replied.

As the evening wore on, I said to Ralph, “You can start texting her at 10 to see when she is coming home.”

At 10, Ralph didn’t get any response. Texting or calling.

I messaged my younger daughter, Patty – Well, Marie is out with friends. I have never met these friends.

Patty – So? You don’t get to be protective like that forever. Let it go.

I texted Marie, and asked her to please call me. She called me at 11:00 and said she was on her way. I could hear the voice of the young man who was bringing her back home in the car. I asked if he was going to bring her home.

When she came home, we didn’t say anything about our concerns. We asked her what she did and did she have a good time. She had a wonderful time. They laughed a lot. Went to a restaurant that several different kinds of locally brewed root beers. They ate fried mushrooms, fried pickles, and chili dogs. We did mention that we would like it in the future if when she went out with her friends to have them drop her off at the condo. That way we wouldn’t have to go out in our car to get her late at night.

Patty is right. We can’t protect her forever. She will have a life of her own even while we live together. 80% of the employees at her job are required to have some sort of disability or health condition that is a barrier to employment. The young man who organized this outing is about 28 and just got his license last year. Four of them went out. Two young women and two young men. It’s normal for some of them to never be able to drive. And they took care of each other.

I haven’t been writing as much lately or going to meetings. It’s hard to find the time when somebody needs you.

Last month, Mary, my 27-year-old daughter with autism, mentioned she was feeling lonely, bored, and discouraged about her job prospects (It has been 3 years since graduation without landing a full time or half time job in her field). My mother instinct revved up and I sprung into action or inaction, that is. So I have dropped some of my writing, quilting, and scrapbooking nights in order to spend some time with her after work watching The Voice, and American Idol. We’ve gone out from breakfast on some Saturdays.

When my children were young, before we knew about the diagnosis of autism, I thought by this time in my life, my children would be out on their own. Not that they wouldn’t need me anymore, just that their need for my help would diminish and our relationship would change. After the diagnosis, I realized that my plans for my retirement would need some adjustment. I might be caring for one or more of my children for the rest of my life.

We began a life filled with therapy, IEP meetings, medication decisions, searching for answers, repeating the same instructions and promptings to our children, going to conferences, etc. As those of you who have read this blog for any length of time know, our children have made remarkable progress.

Then, when Mary, our most impaired child, graduated from college, I thought I might have some time after all, to pursue my own hobbies and develop more friendships with other adults my age. When my siblings and I left home, my parents enjoyed spending more time with people their own age, playing cards, going out to eat, taking long trips and vacations.

Despite his diagnosis with autism, Will has now lived in his own apartment for almost two years. He has a good job with a large corporation. Patty, Mary’s younger sister, is about to graduate from college, and in a year or two expects to move away and attend graduate school. Her mentoring professor has called her one of his most brilliant students, which embarrasses Patty.

But Mary works one day a week at the homeless shelter, for which I am grateful. Other than that, she is home with the dog, five cats and her computer. Her sister attends school five days a week. Her father and I work full time.

I am struggling with my own reaction to this turn of events, wondering why I feel so selfish and trapped. When I think about going on a long vacation to Washington DC or Mt. Rushmore, I think about getting Mary a ticket so she can come with us. She would be interested in a trip to those locations. I would like to go to a week-long writers conference in another city. I think my husband would enjoy going with me. But Mary is not interested in writing. Therefore, my angst.

Then I read this wonderful blog post from a young mother of three young children, struggling with her desire to write and her responsibility to her children.

And my struggle came into focus. I am not free to do what I want. When I had young children, I had these same thoughts. However, like many parents of adult children with disabilities, the future is here and the plan to resume my young dream of writing the great American novel is still on hold.

When our kids were young, we struggled with isolation. We weren’t doing the same activities with our kids that other parents were doing. Instead of little league and girl scouts, we took our kids to therapy. Senior class trips were not an option for our kids because they would have needed their own chaperone, and the spots were limited to other sponsors because our kids would have needed more attention, more watching. It wasn’t worth the fight. The road less traveled meant isolation by default.

Wondering what to do about this has been waking me up at night. As older adults, we are battling isolation both for ourselves and for our Mary. One of my reasons for encouraging Mary to attend college was that “at least she would have something to do.” Then college ended.

The search for work has been ongoing. Mary is hindered by her inability to drive and her autism. Even though she dresses well and has a good resume, she can’t find competitive employment. I suspect it is her autism showing. If she says up front that she has autism, interviewers will politely dismiss her as soon as possible. If she stays quiet regarding her disability, interviewers still know something is not quite right, though they might suspect mild cerebral palsy. Either way, there has been no job. She is beginning to be willing to do anything (but not able due to her physical disability).

Mary will be 28 this summer. I think about her at 30, 40, 50…. I just turned 55 and Ralph is 62. We take her to church with us where she has a very good Sunday School class with people her own age. Someday we won’t be able to take her. Church is seven miles away and there is no bus to church. We won’t always be around to take her to church, plays, concerts, and vacations. She will have to find her own way.

My idea of a successful launch for her is to earn her own living, have an apartment, along with social activities, and her own church. I don’t know if this will be possible for her. If she always lives with someone in the family, maybe that is best. It is a hedge against complete isolation. Not what she wants, but maybe she can find contentment. Maybe I can find contentment. I want to make sure she is taken care of, at the least.

The apostle Paul wrote to Timothy in the first century, “but godliness with contentment is great gain.” (I Timothy 6:6).

And I turn to God for wisdom. The apostle James wrote, “5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.” (James 1:5). I have come to God many times asking for wisdom regarding my children…and He has met my needs many times.

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This is a heavy topic, but isolation is a common problem for individuals with disabilities and those who care for them. I am praying that Mary will come up with some of her own ideas.

Befriend a person with autism. Will’s first friend in fifth grade meant the world to him, and to us. Many befriended him in high school and in the church youth group. Mary had more difficulty making friends.

Befriend their parents; having a child with autism can be very isolating. Befriend their siblings.

Support autism research and autism support groups.

Provide respite if you can, or a meal. Raising children with autism is exhausting and at times, lonely.

Maybe they ought to change the name to World Autism ACTION day.

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